Diabetes is in the news lately. Most recently, as of this post, Twitter had a fun malfunction of policy that resulted in Eli Lilly temporarily losing a massive amount of value, taking other drug manufacturers with them, because of a spoofed account on Twitter with an $8 verification.

Eli Lilly responded.

We apologize to those who have been served a misleading message from a fake Lilly account. Our official Twitter account is @LillyPad.

This sparked a conversation: Why is insulin so expensive?

Well, it sparked that response. This conversation has been raging among diabetes communities for a while, and we’ve been seeing attempts at bringing some control over this.

In the US, a vial (10ml U100) costs between $100 and $300. There’s different types of insulin, and Type 1 Diabetes use multiple types in their daily routines. I, personally, saw a note from one T1D that they use more than 10 vials per month. Because of the way insurance works with filling prescriptions, this means a T1D can still spend hundreds of dollars per month on insulin that is covered.

But there’s misinformation that is prevelant, particularly in conservative circles, primarily fed by pharmaceutical companies to push a narrative away from hurting their massive profits. Primarily, the misinformation centers around blaming the diabetic for their condition.

And, sadly, there are diabetics that perpetuate these lies.

Type 1 Diabetes - Primarily An Autoimmune Disease

Most people who depend on insulin for mere survival are Type 1 Diabetes. Without insulin, it could be a matter of days before they die of a condition called diabetic ketoacidosis (DKA). This is a condition that can occur when there is not enough insulin or glucose in the body to feed it, so the body produces ketones to compensate, but does so uncontrolled. DKA is a deadly condition.

T1D produce very little or no insulin naturally. It’s almost entirely supplemented. Basal and bolus rates have to be managed. It’s, primarily, caused by the body’s immune system attacking the insulin producing beta cells in the pancreas. About 10-15% of T1D don’t present the antibodies which are tested for, but still suffer beta cell destruction for, at present, unknown reasons.

T1D is, typically, diagnosed at a young age. If you’re unlucky enough, it can present before your first birthday, though most get through a few years before diagnosis. T1D can present in adults, also, often in a slower form of beta cell destruction, usually by antibodies, in a condition referred to as Latent Autoimmune Diabetes in Adults (LADA).

The point to get from this information is, generally, people with T1D have not had a chance to apparently fuck up their bodies and “cause” it. In the majority of cases, the body itself starts attacking those eyelets and killing them. And for many T1D, it’s not a gradual onset, either. Many receive a diagnosis after a case of DKA.

Causes for onset are not really well understood. There are some known genetic causes, and there are documented cases where onset came as a result of another illness. Sometimes T1D will have multiple autoimmune disorders, and T1D can come about in relation to this.

Type 2 Diabetes - Is It Really Just Poor Health Choices?

Most T2D don’t depend on insulin to survive. In fact, medical advancements have made it so insulin is so far down the line of treatment options that it’s often not even considered. Many T2D never have to inject insulin, an many who had been on insulin in the past move to these newer drugs that help remove that dependency.

Generally, T2D still produce insulin naturally. In fact, early in diagnosis, T2D tend to produce a lot of insulin, leading to hyperinsulinemia (excess insulin in the blood). With conditions of hyperglycemia and hyperinsulinemia raging in an unmanaged or uncontrolled T2D, complications can occur over time, usually over a long period of time. Some T2D do have lower insulin production though. The primary hallmark of T2D is insulin resistance, which is why the pancreas produces more in order to compensate. T2D can also have reduced beta cell activity, resulting in low insulin production. Highly resistant T2D and those with low beta cell function may still depend on, at least, long acting, or basal, insulin supplementation. Most T2D never need multiple daily injections (MDI).

T2D is typically diagnosed in adults, but can have its start at a younger age. It, generally, has a very slow onset and a very slow progression. T2D is a progressive disease, which means it’s always getting worse. The rate at which it gets worse varies depending on a number of factors. Obesity is a known factor for accelerating onset and complicating management. Understand, though, that not everyone who has T2D is overweight. I’ve, personally, met very lean and skinny T2D.

Some people can manage T2D with lifestyle changes alone. That is, they can adopt a diet and routine that helps keep symptoms at bay without the use of treatment. But not everyone can do this. Many T2D will need treatment, though this can mean something as minor as metformin, or going all the way up to needing insulin along with a full T2D drug treatment regimen.

T2D drugs have gotten really good. There’s a few key classes that do the most good, some even working too good for some people. These drugs promote getting the body to do as much of the work as possible to wrangle control over the disease by doing things like increasing insulin sensitivity, promoting the production of more insulin, and excreting excess glucose out of the body.

T2D has a far lower risk of DKA, but not a zero risk. There’s a type of DKA referred to as eDKA where BG shoes only slightly high values, but ketones are being produced, causing acidity of the blood. Much like T1D DKA, this is a deadly condition. SGLT-2 inhibitor drugs elevate this risk.

Causes for onset are not really well understood, but it appears to be primarily genetic. Illness has been known to trigger onset (a lot coming out of COVID in fact). It is known that excess consumption is not a factor in causing T2D, nor is obesity, but they can be risk factors for onset for those with genetic predisposition. That is to say, there are people living grossly unhealthy lifestyles with no diabetic symptoms.

But Wait, There’s More

Did you know there’s more types of diabetes? There’s a category collectively referred to as Type 3 where there is damage or removal of some or all of the pancreas due to external factors. This can come from illness, cancer, and so on. Type 3c is the most common form of this, which is primarily around removal of the pancreas.

Generally, treating this is similar to T1D as this means the pancreas is not doing its job, or in the case of T3cD, it’s missing. That means T3D is insulin dependent, and without it, is likely to suffer DKA in a matter of days.

You can, effectively, group T3D with T1D when it comes to diabetic management.

Another group is referred to as Maturity Onset of Diabetes in the Young (MODY). This is a fairly rare form of diabetes and far less understood. Often, this will, also, require a T1D type regimen.

What About Curing It?

There’s a lot of misinformation that diabetes can be reversed or cured. There are alleged experts who claim to cure diabetes with special diets. This perpetuates the idea that diabetes is caused by the diabetic. And it’s all not true.

As I mentioned earlier, T1D requires acquiring and using insulin in order to survive. There is no special diet nor routine to change this. The keto diet may actually be a dangerous option for T1D as the diabetic now has to balance not only their blood glucose, but also try to avoid causing their blood to become acidic from excess ketones. Which is to say, a T1D attempting a keto or carnivore diet greatly elevates their risk of DKA. Again, this is a deadly condition. T1D have tools to manage their condition with technology and drug advancements.

As I mentioned earlier, some T2D can manage their condition with lifestyle changes, but not all. It’s up to the diabetic how they want to tackle this problem, but they have to make their changes permanently and sustainably. Some of the misinformation on “curing” or “reversing” it is providing unsustainable advice. Mental health is a big part of this as well, and a lot of these programs can be pretty abusive about getting results and blaming the diabetic if they don’t.

Simply put, there is no known cure for any type of diabetes. T2D has the possibility, but not guarantee, for management without treatment, but this is not being cured. It’s often referred to as remission, but this implies the disease is not present. Reversing the non-treatment management and returning to a previous state of health will result in symptoms returning. Additionally, at least some of these people will present symptoms later in life even if they maintain their new lifestyle.

The Diabetic’s Fault

As I’ve noted, a lot of misinformation revolves around blaming the diabetic. What’s really bad about this, as you can see in this really ignorant tweet, is it groups all diabetics together in the blame game.

With health services messaging labeling “risk factors” for T2D, the messaging tends to be very incomplete about what that means. Obesity is a risk factor for diabetes, which gets interpreted as obesity causing diabetes. The reality is obesity is a risk factor for onset of Type 2 Diabetes. The semantics are important.

For the most part, we know T2D has genetic components. The majority of T2D have a family history of it. Basically, if it’s going to happen, it’ll happen whether the diabetic leads a healthy lifestyle, or if they lead the grossest unhealthy lifestyle possible.

But body fat is known to promote insulin resistance. That means the diabetic can cause it, right?

Not really. There are people who lead horribly unhealthy lifestyles that are clinically obese who never present diabetic symptoms. And, as I’ve mentioned, there are people who lead very healthy lifestyles, nowhere near obese, and very lean who are T2D.

The risk factor, then, has more to do with accelerating the onset of T2D, and complciating management. A clinically obese T2D can manage their condition with treatment, including without the use of insulin, and remain clinically obese. Doing so can increase the rate of progression, even if blood glucose management is good. It just might mean the diabetic can stave off eye, kidney, and foot issues.

But an obese T2D still has to deal with hyperinsulinemia . This can lead to cardiovascular issues, there’s some links with cancer, and various other complications. Additionally, not taking care of the obesity problem can, eventually, lead to the T2D progression necessitating insulin injections.

The cause of the disease is not the diabetic’s fault. Poor management can be. Complications can be. But tackling the disease, once you know you have it, can mean most of the problems…just aren’t.

But notice one thing about these last few paragraphs: This is all about T2D. When it comes to blaming T1D for not being able to produce “free” insulin naturally, that’s just a display of plain ol stupidity.

Cost Of Insulin And Saving Lives

When we talk about people rationing insulin, we’re talking about diabetics that depend on it. We’re talking, primarily, about T1D and T3D. A T2D having to ration their insulin isn’t as big a deal, and they’re not going to quickly die from it.

We’re talking about people who have a disease that happens regardless of what health choices they make.

And when we are talking about the price of insulin, we are primarily talking about it in the US . Because in the US, while American diabetics pay $100-300 for a vial, diabetics in other countries pay as much as $12, but mostly less than $10. Yeah, insurance can bring the price of a vial down to copay levels, but when you have to use a variable amount, there is no monthly supply to cap that cost, so insured diabetics can still pay hundreds of dollars per month.

This is why even insured diabetic Americans might still ration their insulin.

And let me reiterate this yet again: We’re talking about Type 1 Diabetics, which has absolutely no association with health choices as a risk factor. We can debate for all eternity whether a 44oz cup of Coca-Cola causes T2D, but there’s absollutely no debate that none of that matters for T1D and T3D.

Our Leaders Spreading Lies

It’s well known our leaders are bought and paid for by corporations. Pharma has a powerful lobby that fills the pockets of politicions quite nicely. Which is why you get language from them that is completely counter to well documented scientific facts about diabetes of all types. It’s easy to convince people to blame diabetics for their condition. It has strong ties to obesity and obesity is also blamed on the person as a choice.

I wish I had a platform to really get this factual truth ou there that breaks all the broken stereotypes.

We need affordable insulin. We need affordable drugs. We need it all. But so long as people keep spreading these lies, we’ll have to keep fighting for it. And we do have to keep fighting for it. Increasingly, American insurance companies are looking for ways to not cover diabetic supplies. I’ve heard stories of T2D being told they don’t need to monitor their BG, so they don’t have access to affordable and useful monitoring. They’re not being provided the tools they need to manage their condition.

Instead, the response is “stop being fat”. Seriously. There’s a diabetic drug, one that is no longer favored, thankfully, that literally made “stop being fat” impossible. I was literally put on it and told to lose weight. And I failed despite major effort and expense put into it. It made me feel like a failure, and this is where a lot of diabetics end up when our leaders are telling them their disease is their fault.

This is a major problem.

What About Me?

I’m a T2D with reduced beta cell function. I do have insulin resistance, but likely improved sensitivity through lifestyle changes and treatment. But due to reduced beta cell function, I’m also on insulin. I only use long acting, or basal, insulin. If I can’t get it, I’ll live on. I can take drastic dietary measures to continue to keep my BG down at the cost of mental health and other factors, but I could do it.

I’m a well controlled T2D. Because I’ve made myself well informed of treatment options available, and kept myself up to date as more advances have come, I’ve chased these advances. I use a continuous glucose monitor (CGM) but American insurance companies are increasingly denying this for T2D. I go through annual prior authorizations for covered drugs. My GLP-1 agonist is not covered by my insurance and I require assistance to afford it. My CGM is not covered by my insurance and I require assistance to afford it.

I’m not poor. I can afford all of this. But it hurts my ability to afford other things I want to enjoy because American insurance believes I shouldn’t be allowed to. If I wasn’t in the financial position I’m in now, I would definitely not be well controlled. And I know people in this position so I know it to be true.

I actually am in the process, as of writing this, of making adjustments to my medications with the goal of reducing my insulin usage. I have already committed lifestyle changes to work on this, and my body shows it. There’s really not much more I can do there. I may never be able to drop insulin in order to keep my BG management healthy. But reducing insulin would help me be able to manage my weight better.

A Complex Condition

Diabetes is complex. We don’t fully understand it. Many people think they do, but when you see them making broad claims encompassing all types of diabetes, it’s clear they don’t know anything about what they’re talking about.

Among the types, T2D is probably the most complex. And it’s the most misinformed. When most people talk about diabetes, its risk factors, health choices, and so on, they don’t realize they’re talking about a specific type of diabetes. And when they talk about insulin, they don’t realize they’re talking about an entirely different type of diabetes that is an entirely different disease.

The only relation T1D and T2D have is blood glucose management issues. But the reasons for those issues are not in any way related to each other. They are literally different diseases. They can have shared treatments due to shared symptoms but that’s only because we treat the symptoms, not the cause.

We literally can’t treat the cause because we don’t know what it is, outside of “strong genetics correlation”. We can only attack the symptoms.

We can’t group these diseases together in the way that people are doing. We need to understand that when we’re talking about insulin, we’re literally not talking about the diabetics these people want to insult.

To Those That Spread Misinformation

I have a request to those that choose to spread this garbage because it’s coming from their leaders.

Go read about diabetes. Actually learn about it. I don’t mean from Facebook, Twitter, Youtube, or Tiktok. I don’t mean from supposed doctors trying to sell their cures. I mean real research. Follow the conclusions. Refer to real science on the matter. Put in the effort to understand what it is you’re lying about.

From this, you have a choice. You can either be informed and continue lying because your leaders do it. You can ignore this and continue lying because your leaders do it. Or you can realize you don’t actually fully understand what’s going on with this disease.

From there, either shut the fuck up or be an advocate. Having this disease is hard enough. Having bullshit misinformation influence policy making it harder is fucked up and evil. And I will always assume anyone pushing misinformation about diabetes as part of an agenda is doing so out of malice, and not misunderstanding.